Building a Cardiac Palliative Care Program: A Qualitative Study of the Experiences of Ten Program Leaders From Across the United States

Abstract

Context: Palliative care is guideline-recommended for patients with advanced heart failure (HF). However, studies on how cardiac palliative care is provided in the United States are lacking.

Objectives: To study how cardiac palliative care programs provide services, and to identify challenges and facilitators they encountered in program development.

Methods: In this qualitative descriptive study, we used purposive and snowball sampling approaches to identify cardiac palliative care program leaders across the United States, administered a survey and conducted semi-structured interviews. Interview transcripts were coded and evaluated using thematic analysis.

Results: While cardiac palliative care programs vary in their organizational setup, they all provide comprehensive interdisciplinary palliative care services, ideally across the care continuum. They predominantly serve HF patients who are evaluated for advanced therapies or have complex needs. The challenges which cardiac palliative care programs face include reaching those cardiac patients who need palliative care the most and collaborating with cardiologists who do not see value added from palliative care for their patients. Facilitators of cardiac palliative care program development include building personal relationships with cardiology providers, proactively assessing local institution needs, and tailoring palliative care services to meet patient and provider needs.

Conclusion: Cardiac palliative care programs vary in their organizational setup but provide similar services and face similar challenges. The challenges and facilitators we identified can inform the development of future cardiac palliative care programs.

Keywords: Palliative care; cardiac palliative care; challenges; facilitators; heart failure.